Events

Jul 19, 2019

Friday, July 19, 2019 (1)

July 19, 2019
Friday
  • LAL-D Registry

  • Jul 19, 2019 to Jul 29, 2029
  • Location: Worldwide
  • Description:

    Not only do we have a new LAL-D Aware Information and LAL-D Community website, but we are creating an LAL-D Aware Patient Registry.

    What is a Patient Registry?

    A Patient Registry is a way to collect health information so researchers…

  • Created by: Donna Lee

GLOBAL GENES RARE PATIENT ADVOCACY SUMMIT 2019

September 18th-September 20th at the  Sheraton San Diego Hotel & Marina.

GLOBAL GENES 2019.

Meet the rare disease comminuty, family, patients, caregivers, researchers and clinicians. 

Learn about new developments and research for rare diseases. 

There is strength in numbers and this is a great opportunity to learn and get involved.

See you there!